Decisions, Decisions

I wanted to update everyone on Lily’s treatment since we’ve had to make a lot of big decisions lately.

Jason and I had a gut feeling that the CBD treatment that Lily is on was giving us more control than the diet treatment. We were fighting what our gut was telling us for awhile and we finally decided to listen and wean her from the diet. The turning point for me is when I realized that it is totally possible the diet effects how the body metabolizes CBD and we might not see the full effect of it until she’s on a normal diet.  It would take a long time to explain that, but it’s very possible especially in Lily’s case.  So, over the course of the past three weeks, we’ve come off the diet!

Going off the diet isn’t just a decision.  It’s a process.  And we’re still working through it.  Come to find out Lily has been programmed to eat a keto diet and is scared to venture.  We are slowly presenting her with new foods and leaving it up to her to try new things.  When she gets scared, you can see fear in her eyes and she is so confused.  She goes into fight or flight.  It’s so sad!  So we are taking it slow.  But we know she likes apples!

She’s no longer in therapeutic ketosis.  So that means we don’t have to poke her finger 2+ times a day and we don’t have to measure food.  No offense to parents who don’t have kids on a special diet, but you have NO IDEA how easy you have it.  The past couple weeks without measuring food has been so enlightening to me.  I had forgotten what it was like to just make food and give it to your kids and not worry if they eat it or not.  That’s it?! We are still avoiding sugary things and will probably never go back to a “normal” diet, but we are still amazed at how easy it is.  We can leave the house without making and packing a food bag.  And we can eat out almost anywhere.  This is amazing!

We aren’t 100% sure we can go without the diet, but so far things are looking good.  Removing the diet from the equation takes away a lot of variables.  We can now concentrate on getting the right dose of CBD without wondering if it’s the diet - ketones, glucose, carnitine, etc etc etc - causing fallout.  Once we feel good about the control we have, we’ll resume weaning her pharmaceuticals.  We are still on 600mg of Banzel and 25mg of Onfi.  We’ll have to wean Banzel at around 50mg per week and Onfi at 1.25mg per 2 weeks.  That means it will be over a year.  It’s another process and bridge we have yet to cross.

Over the past month we’ve adjusted CBD and taken her off the diet.  As a result, we’re seeing our Lily again!  And Annie has a sister for the first time!  When Lily was moody and not feeling well, Annie left her alone.  She wanted nothing to do with her and vice-versa.  Which required a lot of interaction with mommy and daddy.  Well, now, Annie has a playmate!  They play together now in a way they have never played together before.  And it makes parenting so much easier!  They love each other so much!  Just today they were in the middle of our cul de sac giving each other a hug and kiss!  They. Love. Playing. Together - I can’t believe that has been missing for the past 2+ years!  Poor Annie!

We still see mood swings and behavior issues, but not as bad as before.  She’s really been into using big words.  It’s almost like her brain has been absorbing information for the past 2+ years, but she hasn’t been able to process it to use it.  All of the sudden she’s processing all this information and is spitting out big words and things we’ve never heard before.  Today she told me she was “pwacticing good owal hygiene”.  What?  She’s also been getting songs stuck in her head. Up until now she hasn’t been able to remember words to a song let alone get them stuck in her head.  So hearing her sing the same song over and over and over and over, is music to my ears!

I NEVER forgot her personality.  I’ve been waiting for it to come back.  But I think the only people who truly remember it are Jason and I.  She’s spunky.  She likes to tease.  She’s a little sarcastic.  But the thing I missed the most is her real laugh.  The first time I heard it in 2 years was a few weeks ago.  It took me back to the very first time I heard it when she was just a baby.  When she was a baby I remember thinking 'oh my God, that is a great big, deep-from-the-inside giggle'.  I loved making her laugh because I loved hearing it. And seeing it.  Her whole face giggles.  It’s meaningful.  It’s true.  And it’s my Lily.

We went to Chi-fil-a for dinner tonight.  After eating the girls were playing in the play room and Jason and I chatted with a couple other parents with kids there.  The other parents were talking about the nuances of having toddlers/preschoolers.  They weren’t complaining, just talking about the challenges and miscommunications while rolling their eyes - in a funny, parenting-is-crazy sort of way.  Jason and I sat there quietly both thinking the same thing as each other, but just enjoying the moment. Because right before walking into the play room we were just saying to each other how the moments of “normal” parenting are getting longer and longer.  And OH MY GOD, it is so EASY!  Knowing that these other parents were rolling their eyes about something that seemed so easy, made me sit back, relax and feel completely capable of being a parent.  I haven’t felt capable of handling our situation since I can remember.  But I now have a resume that over qualifies me for what we have coming to us more and more. It’s like resigning from NASA to go work for McDonald’s.

Just so everyone knows…  Due to a combination of needing to hover-parent to keep Lily safe and her missing out on months of critical brain development due to frequent seizures, Lily hasn’t been able to develop some skills and abilities that are typical for a 5-year-old.  Many of them are things only we notice.  Others are blatant to anyone she comes in contact with.  But the good news is that it can be fixed!  We are clear on what she needs help with and we are getting her the help she needs right now, but she is still having seizures and still on a large dose of seizure medications.  So it’s also a process.

You all have been with us through this journey and are so understanding to our circumstances.  I feel really bad when it happens but I can’t take time out when it happens to explain it.  So I want you all to know that if Lily doesn’t return a “hello” or if she shrugs away from an affectionate hug or pat, it’s not because she’s being spiteful.  Now that we see the real Lily pretty frequently, we know she is an incredibly loving, HAPPY and affectionate little girl.  But having you all aware of this means that the day Lily gives you a high-five or a “hello”, it’s a big step.  So don’t stop trying. If it’s ever returned, just feel special knowing that you where part of a big leap forward.  And trust me, whenever Jason and I see it happen, you can be sure we’re holding back tears.

God has blessed us with so much.  I recently had an encounter with a women who cares for a child/adult with a seizure disorder who couldn’t afford a roof over their heads because medications cost too much.  But they felt blessed even in their situation.  If they’re blessed, what am I?  Jeez… God loves us!